MACCS — Care Platform for Kidney Transplants

Telemedical care for transplant patients and patients with kidney disease

The aim is to pro­vi­de pati­ents with the best pos­si­ble sup­port in adhe­ring to the­ra­py spe­ci­fi­ca­ti­ons, reco­gni­zing com­pli­ca­ti­ons in good time and avo­i­ding them in the long term, and impro­ving the patient’s qua­li­ty of life.

After a kid­ney trans­plant, pati­ents have to stick to a com­plex the­ra­py regi­men for life: On avera­ge, eight to twel­ve tablets have to be taken per day, and cer­tain sub­s­tances even at a fixed time. Fail­ure to do so can result in serious com­pli­ca­ti­ons. In the worst case, the trans­plan­ted organ is rejec­ted and the func­tion of the trans­plan­ted organ is lost. The con­se­quen­ces are leng­thy hos­pi­tal stays and resump­ti­on of dialysis.

In addi­ti­on, the pati­ents have to go to the trans­plant cen­ter for quar­ter­ly check-ups, in addi­ti­on to other spe­cia­list con­sul­ta­ti­ons. Long jour­neys are ano­ther bur­den for many pati­ents. In order to coun­ter­act this, in the past the care of the pati­ents was alter­na­te­ly taken over by the trans­plant cen­ter and the resi­dent nephrolo­gist. While this redu­ced tra­vel times, it meant that poten­ti­al­ly important infor­ma­ti­on was lost. Wit­hout cer­tain com­ple­te infor­ma­ti­on, the­ra­py decis­i­ons are signi­fi­cant­ly more dif­fi­cult or unneces­s­a­ri­ly pro­lon­ged. Kid­ney trans­plant pati­ents are often mul­ti­mor­bid and always immu­n­o­com­pro­mi­sed. They con­sult spe­cia­lists from various disci­pli­nes and are more vul­nerable to com­pli­ca­ti­ons of any kind. The­r­e­fo­re, more inten­si­ve care that is available at short noti­ce is often necessary.

Functions of MACCS (Medical All-round Care Service Solution)

MACCS repres­ents a modern, intui­ti­ve and effec­ti­ve solu­ti­on for kid­ney trans­plant pati­ents with their com­plex medi­cal requi­re­ments. MACCS enables the tele­me­di­cal con­nec­tion of our pati­ents for the first time. Video tele­pho­ny is high­ly spe­cia­li­zed medi­cal care that is easi­ly acces­si­ble, fle­xi­ble and available direct­ly in the home envi­ron­ment. It is car­ri­ed out in addi­ti­on to regu­lar fol­low-up care in the prac­ti­ce and trans­plant out­pa­ti­ent clinic.

It is our goal to demons­tra­b­ly impro­ve the tre­at­ment of peo­p­le with a kid­ney trans­plant and thus also their qua­li­ty of life. In order to achie­ve this, the very clo­se coope­ra­ti­on bet­ween pati­ents and their doc­tors — in prac­ti­ce and in the trans­plant cen­ter — is essen­ti­al. Pati­ents can only mas­ter the many chal­lenges after an organ trans­plant on their own respon­si­bi­li­ty and self-deter­mi­na­ti­on if the­re is an inten­si­ve exch­an­ge bet­ween all tho­se invol­ved. Tog­e­ther we do ever­y­thing to achie­ve the best pos­si­ble trans­plant func­tion with maxi­mum trans­plant survival. 

The most important pil­lars of the the­ra­py sche­me can be docu­men­ted in an app and moni­to­red by a tele­me­di­ci­ne team spe­ci­al­ly set up for MACCS (vital para­me­ters such as weight, blood pres­su­re, heart rate, tem­pe­ra­tu­re). The pati­ent is also given the oppor­tu­ni­ty to assess their own sta­te of health on a dai­ly basis and to sign off on taking the medi­ca­ti­on, so that the tele­me­di­ci­ne team can remo­te­ly obtain an over­view of their sta­te of health and adhe­rence to the­ra­py. This leads to a new dimen­si­on of secu­ri­ty at home, which in turn crea­tes qua­li­ty of life. If the vital para­me­ters that have been for­ward­ed or the dai­ly inta­ke of medi­ca­ti­on are out­side the nor­mal ran­ge, the tele­me­di­ci­ne team will cont­act the pati­ent and inqui­re about the situa­ti­on. Depen­ding on the need, this pro­cess should lead to a the­ra­py recom­men­da­ti­on, an adjus­t­ment or chan­ge of medi­ca­ti­on or a trip to an emer­gen­cy depart­ment. The doc­tors in the kid­ney trans­plant out­pa­ti­ent cli­nic and the par­ti­ci­pa­ting kid­ney spe­cia­lists recei­ve this information.

Ano­ther important aspect is the auto­ma­ted digi­tal trans­fer of infor­ma­ti­on to par­ti­ci­pa­ting phy­si­ci­ans who use Nephro7, the lea­ding prac­ti­ce infor­ma­ti­on sys­tem in nephrolo­gy. In this way, the doc­tors invol­ved in the tre­at­ment first share the coll­ec­ted labo­ra­to­ry values, medi­ca­ti­on plans, pro­gress notes and other docu­ments across sectors.

The sen­si­ti­ve pati­ent data is stored in the TBa­se pati­ent docu­men­ta­ti­on sys­tem, which was deve­lo­ped around 20 years ago in coope­ra­ti­on bet­ween the Depart­ment of Nephrolo­gy and the Chair of Arti­fi­ci­al Intel­li­gence at the Hum­boldt Uni­ver­si­ty in Ber­lin. This means that the sen­si­ti­ve pati­ent data that is for­ward­ed via the MACCS plat­form is stored par­ti­cu­lar­ly secu­re­ly in the Cha­ri­té data cen­ter behind the Cha­ri­té fire­wall. Out­side the Cha­ri­té fire­wall, only pseud­ony­mi­sed data is exch­an­ged via secu­re HL7 FHIR inter­faces. Unen­crypt­ed data is then only available to the user on the end devices themselves.

MACSS can sup­port pati­ents in the com­plex and lifel­ong the­ra­py and thus avo­id com­pli­ca­ti­ons. The care con­cept is inten­ded to redu­ce hos­pi­tal stays, pre­vent a rejec­tion reac­tion of the trans­plan­ted kid­ney and avert a final loss of func­tion of the trans­plan­ted kidney.

Source:

https://nephrologie-intensivmedizin.charite.de/forschung/arbeitsgruppen/ag_digitale_nephrologie/

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